When prevention is the best remedy: HIV pre-exposure prophylaxis (PrEP) among adolescents gays and transgender women in Belo Horizonte, Minas Gerais State, Brazil

Quando a prevenção é o melhor remédio: profilaxia pré-exposição do HIV (PrEP) entre adolescentes gays e mulheres transgênero em Belo Horizonte, Minas Gerais, Brasil

Cuando la prevención es el mejor remedio: profilaxis previa a la exposición al VIH (PrEP) entre adolescentes gays y mujeres transgénero en Belo Horizonte, Minas Gerais, Brasil

Abstracts

Based on the incorporation of pre-exposure prophylaxis (PrEP) as an HIV prevention strategy and considering the need to comprehend the use of medication among young people, this article analyzes narratives of gay men and transgender women from Belo Horizonte, Minas Gerais State, Brazil, participating in the PrEP1519 study. This is a qualitative research, based on the interpretative anthropology, developed by 10 in-depth interviews with PrEP users followed-up for at least three months between October and November 2019. The results showed that the drug was seen as the main motivation for participating in the study and as a strategy combined with the use of condoms, whether as additional prevention, or assuming the leading role. The medication revealed signs built by the gender performances and their relation to other medications, especially the experience of trans girls in hormonal therapy. Regarding the socialization of the use of PrEP, the narratives showed that there was no secret between the couples, which did not meant that stigmas on the association with HIV did not exist, mainly in the virtual context. In the family environment, they reported questions about the preventive function of the medication and the voluntary nature of the participation in the study. The youth’s narratives revealed plural meanings of the medication and its social use, composing both the boys’ and girls’ performances. The signs attributed to the medication indicated that in addition to maintenance of health, the medication improves life and sexual freedom.

Keywords:
Pre-Exposure Prophylaxis; Medical Anthropology; Adolescents; Transgender Women; Gays

Com base na incorporação da profilaxia pré-exposição (PrEP) como estratégia para a prevenção do HIV, e considerando a necessidade de compreender o uso da medicação entre jovens, o artigo analisa as narrativas de homens gays e mulheres transgênero da cidade de Belo Horizonte, Minas Gerais, Brasil, participantes no estudo PrEP1519. A pesquisa qualitativa, baseada na antropologia interpretativa, foi desenvolvida através de 10 entrevistas em profundidade com usuários de PrEP acompanhados durante pelo menos três meses entre outubro e novembro de 2019. Os resultados mostraram que o medicamento era visto como a principal motivação para participar no estudo e como estratégia combinada com o uso de preservativos, seja como prevenção adicional ou assumindo o papel principal. A medicação revelou sinais elaborados pelas performances de gênero e sua relação com outros medicamentos, principalmente a experiência de meninas trans em uso de hormonioterapia. Quanto à socialização do uso da PrEP, as narrativas mostraram que não havia segredo entre os casais, o que não significava a inexistência de estigma em relação à associação com HIV, principalmente no contexto virtual. No ambiente familiar, os participantes relatavam questões sobre a função preventiva da medicação e a natureza voluntária da participação no estudo. As narrativas dos jovens revelaram sentidos plurais atribuídos à medicação e ao seu uso social, compondo as performances tanto dos meninos quanto das meninas. Os sinais atribuídos à medicação indicaram que além da manutenção da saúde, a medicação melhora a vida e a liberdade sexual dos usuários.

Palavras-chave:
Profilaxia Pré-Exposição; Antropologia Médica; Adolescentes; Mulher Transgênero; Gays

Basado en la incorporación de la profilaxis previa a la exposición (PrEP) como una estrategia de prevención contra el VIH, y considerando la necesidad de entender el uso de medicación entre gente joven, este artículo analiza narrativas de hombres gais y mujeres transgénero de Belo Horizonte, Minas Gerais, Brasil, que participan en el estudio PrEP1519. Esta es una investigación cualitativa, basada en la antropología interpretativa, desarrollada por 10 entrevistas en profundidad con usuarios de PrEP, a quienes se les realizó un seguimiento durante al menos tres meses entre octubre y noviembre de 2019. Los resultados mostraron que la medicación fue considerada como la principal motivación de participar en el estudio y como una estrategia combinada con el uso de condones, ya sea como prevención adicional, o asumiendo el papel principal. La medicación reveló signos de estar construida por el desempeño del género y su relación con otros medicamentos, especialmente la experiencia de las chicas trans en la terapia hormonal. Respecto a la socialización del uso del PrEP, las narrativas mostraron que no había secretos entre las parejas, lo cual no significó que no existieran estigmas en la asociación con el VIH, principalmente en contexto virtual. En el ambiente familiar, se informó de cuestiones sobre la función preventiva de la medicación y la naturaleza voluntaria de participar en el estudio. Las narrativas de ellos jóvenes revelaron significados plurales de la medicación y su uso social, formando parte del desempeño tanto de los chicos como de las chicas. Los signos atribuidos a la medicación indicaron que además de mantener la salud, la medicación mejora la vida y la libertad sexual.

Palabras-clave:
Profilaxis Pre-Exposición; Antropología Médica; Adolescentes; Mujer Transexual; Gays

Introduction

The purpose of this article is to reflect on the meanings of the medication for HIV pre-exposure prophylaxis (PrEP) for adolescent trans girls and gay boys in Belo Horizonte, Minas Gerais State, Brazil. The medicine, considered herein as an industrial pharmaceutical product, is analyzed - in the health anthropology field - as a meaning object.

It is understood that many of the medication meanings are related to the body and the corporealities ¹. As chemical substances, they are concrete objects that seem to be justified by physical changes on the body, even when these changes are foreign to the subjects who use them. Such meanings are countless; however, they exceed the physical changes, revealing interpretations about disease prevention and control, care, concern, and comfort, depending on the life modes, the subjects, and the relationships established in the different societies ².

Medicines are based on scientific references and scientists agree that there is a need to prove the efficacy and the effectiveness of their purpose. In general, for the assessment of efficacy, randomized clinical studies and demonstration studies are used, the central object of which is to demonstrate the efficacy of the chemical substance when acting in the human body. On the other hand, effectiveness is related to the action of the chemical substance in the body in relation to the practices and the meanings established by individuals and groups in their daily lives, trying to understand them, to find their place, and use them ^3,4.

This research seeks to demonstrate the effectiveness of PrEP among trans girls and gay boys aged 15 to 19 years old in three Brazilian capitals, a strategy centered on the use of a drug composed by the antiretroviral drugs (ARVs) emtricitabine and tenofovir disoproxil fumarate (FTC/TDF), coformulated in a single tablet, with the purpose of reducing the risk of sexual transmission of HIV. PrEP showed to be effective in promoting a barrier against HIV in the entire human body ^5,6. Gradually, the studies concerned to demonstrate its effectiveness in the different contexts, subjects and forms the drug can be used in are expanded ^7,8.

In Brazil, studies on the effectiveness of PrEP (mostly etiological and with adult subjects) have indicated the importance to think on acceptability ^9,10, adherence, engagement, and retention ¹¹. These, mainly based on concrete dimensions for the effectiveness of PrEP (such as financial barriers to accessibility, serum and tissue concentration of the drugs and number of tablets ingested, for assessment of adherence, number of visits to the healthcare service for comprehension of engagement and retention) awaken questions for future studies with the adolescent population and indicate gaps related to the comprehension of the medication, stigmas, daily practices, interpersonal relationships, among other objects privileged by health anthropology.

The different antiretroviral therapies have been objects of important discussions in health anthropology, more specifically in drug anthropology ¹. In this field, reflections on new configurations in the lives of people using antiretroviral drugs, socialization of the therapies beyond the medical area, have contributed to the knowledge of variations and common traits in the experience with the medication ¹. The health and disease notions also stand out, with boundaries that transpose in the context in which chronic diseases, such as HIV, can be considered a state of health under treatment ¹ and, in the context of PrEP, medication can be considered a prevention mode.

Studies about PrEP in the field of health anthropology are more recent ^12,13,14 and are still scarce in Brazil, where drug anthropology is still less investigated ¹⁵. Such studies are mainly focused in the field of gender anthropology, discussing issues such as sexuality and freedom ¹², individualization of self-care and biopolitical technologies related to homosexuality ¹³, biomedical promises, and sexuality policies ¹⁴. An article on the use of PrEP in Brazil described how the notions of “body”, “risk” and “pleasure” compose the subjectivities of users of this prevention technology, configured in and by the everyday practices ¹⁶.

Drugs show to be effective or not, as a whole, as they “carry meanings”, and it is necessary to comprehend them and their relation to effectiveness. Considering that, in this article, we seek to comprehend the meaning of PrEP as an oral tablet to be ingested daily by trans girls and gay boys between 15 and 19 years old, a cut-off made in a Brazilian capital.

Method

Qualitative research that was part of the study to demonstrate the effectiveness of PrEP among adolescents MSM (men who have sex with men) and transgender women at increased risk of HIV infection (PrEP1519 study), developed in Belo Horizonte, São Paulo, and Salvador (Bahia State). More methodological informations can be found in Dourado et al. ¹⁷.

The purpose of the project is to assess the effectiveness of PrEP within the context of combined prevention with other prevention strategies, such as testing for HIV and other sexually transmitted infections (STIs), risk reduction counseling, HIV self-testing, condoms, and lubricating gel. Participants self-selected in one out of two arms to participate in the demonstrative study: (a) the PrEP arm includes those that enrolls in daily use of oral PrEP with the TDF/FTC combination; (b) the non-PrEP arm includes those that are PrEP-eligible but chose not to use drug prophylaxis and opt to receive other HIV combination prevention methods (counseling, condoms, lubricant, douche, and HIV self-test). For the services, it adopts the education between couples based on horizontal relations of respect for each participant’s knowledge and subjectivity ¹⁸.

This article analyzes the narratives of ten young MSM and transgender women aged 15 to 19 years from the city of Belo Horizonte, followed-up by the research for at least three months and who were using PrEP (PrEP Arm) in the period between October and November 2019.

Ten interviews were carried out guided by one of the instruments of PrEP1519 study, Semi-Structured Interview Guide - Young MSM, Transgender Women (15-19 years old) - PrEP Arm, composed of 20 questions on the experience from the use of PrEP. All questions were analyzed for better comprehension of the context; for the analysis of the meanings of the medication for young people, those that enabled a dense description of the experience with the medication were highlighted: “What has the experience with PrEP been in your daily life? Who did you tell that you are using PrEP? How is your sexual life using PrEP? What is it like taking PrEP tablet every day? For you, what are the biggest difficulties or inconvenience of using PrEP? Would you advise a friend to use PrEP? Why?”.

The analysis was based on the theoretical methodological framework of interpretative anthropology ¹⁹ in order to enlighten the interpretation of the meanings presented by the subjects on their social practices. Therefore, it focuses on the comprehension of significant structures implicated in the social action of the individuals given their context ¹⁹. The anthropological framework is included in this study not only for structuring of the research methodology or practice, but as “the proper lived theory” ²⁰, in which the data found are entangled in the action, the empirical evidence, and the theory. Therefore, theory and practice are inseparable, and it is fundamental to consider communication in the context of the situation and transform the experience into text in order to detect the social effectiveness of the individuals’ actions analytically ²⁰.

The narratives were analyzed by reading and pre-analysis of the interviews with the purpose of comprehending the subjects’ conceptual world and the meanings they give to their experiences, as well as the production of the narratives and a bigger immersion in the researched universe. Then, we highlighted significant topics that generated the categories. The categories were selected in a combination of theory and practice by being able to “expose us to the unpredictable, to question established certainties and truths and to make us vulnerable by new surprises” ²⁰ (p. 389). To organize the data, the NVivo12 Plus software (https://www.qsrinternational.com/nvivo/home) was used.

The selected categories are related to the significant topics found, according to the Figure 1.

Figure 1
Significant categories and topics.

The study was carried out in accordance with the guidelines of Resolution n. 466/2012 of the Brazilian National Health Council, which regulates the norms for research involving human beings. It also follows the provisions of Resolution n. 510/2016, which regulates the respect for human dignity and special protection for participants in scientific research involving human beings. It was approved by the WHO Ethics Review Committee (protocol ID: Fiotec-PrEP Adolescent study). The Free and Informed Consent Form was signed by all participants (the parents or legal guardians of individuals younger than 18 years signed the informed consent form). In order to assure confidentiality, and to guarantee anonymity, fictitious names were used for all interviewees.

Results and discussion

Participants’ characterization

The ten interviewed adolescents were between 15 and 19 years old. Half of them declared themselves black and brown, while the other half declared itself white. These census categories relate to people’s self-assessments and fit contextually and pragmatically. All boys identify themselves as cisgender men, and the girls, as trans women. Most boys declare themselves gay and only one of them identifies himself as bisexual. Regarding the girls, one of them identifies herself as heterosexual, two as bisexuals, and one prefers not to identify herself in any orientation. All young people studied in the interview period, three were in elementary school, six were in high school, and one boy was studying Nursing in college. Most of them worked, and only four did not. The reported jobs were administrative assistants in a professional association for young people (for three adolescents), work as young apprentice in the National Service for Industrial Training (SENAI), “model, travel analyst and businessperson”, “attendant in açaí shop” and “braid hairdresser in a beauty salon”. None of them declared any religion, and two boys identified themselves as Christian and atheist.

“A youngster’s head does not heal”: medication and diversity of performances

The meanings attributed to PrEP by these adolescents are crossed by the identity construction ²¹, as repeated performances of systems of signs, whose continuity produces the appearance of essence. The medication, main motivation to participate in the project, is part of the set of semiotic resources these young people have to inform about sexual freedom they esteem; related to sexual practices with pleasure, safety and flexibility, and also health rights.

During the period when these interviews were conducted, the number of young people in the PrEP arm of the research was 65, while 12 young people were in the non-PrEP arm. All our interlocutors were assertive when stating that they came to the project looking for the medication.

“And tell me, how did you come to the project?” (interviewer). “Through Iza, through her. Then she told me... she told me about PrEP, she said that they gave a tablet, PrEP” (Maira).

The medication symbolizes a young person's attitude towards a narrative that, roughly speaking, seems to sustain the old association between lesbian, gay, bisexual, transgender, intersex, queer/questioning, asexual and others (LGBTQIA+) and the HIV population, but which brings subtle and important generational differences. Some look for the medication to avoid death, as HIV has killed so many, evidencing a memory of the “old AIDS” - based on the management of death - which many LGBTQIA+ adults and health authorities insist on keeping alive as a way to reinforce its risks ^22,23.

“I hope it protects me. I hope at least that it will not let me get a disease, it will not let me get HIV, because it is a disease that killed so many, I don't want to be another one” (Thiago).

“...I’d say that it is a drug not to get HIV, although it has a small percentage, but we have to speak directly to young people. (...) Then, they become desperate because people are scared to death of HIV, they may have any type of disease, except HIV” (Lucas).

For others, the drug is something new and it is based on the logic to improve life, as the “new AIDS” ²³ - is experienced by young people who feel “normal” ²⁴ and is related to the quality of life, as Igor explains: “Although the conditions have changed for... In the past few years, the life conditions, the quality of life of a person with HIV have changed... Ah... I don't want to be HIV-positive. And... And having an adjunctive drug that is helping me prevent this”.

“What made you decide to take PrEP?” (interviewer). “I decided that it's for safety, isn’t it? For us, because it is a new thing, a treatment for you not to get AIDS” (Maira).

Situated in the spectrum between the “new and the old AIDS”, our interlocutors demand the medication, revealing a very characteristic flexibility and diversity of their performances, distancing themselves - at least, for now - from the provision that these “highly medicalized” strategies would transform them into “homogeneous consumers” ²⁵.

“But I was a little: ‘Guys (I think I even said as a joke), is this PrEP really protection? I don’t know? A youngster’s head does not heal’. That was it, then I felt more confidence” (Isadora).

“Like, just the use of condoms, which I started using. Interviewer: Ah, did you start using condoms after you started using the medication? (...) Yes. I don’t know (...) like, that medicine thing didn't go into the blood, and the condom helps, so I started using” (Henrique).

The drug, whose supremacy is made relative, is narrated by all our interlocutors as a technology to be combined with condoms, sometimes in a leading role and sometimes as extra prevention.

“The importance of the drug, right? That it is extra prevention. (...) I think I wanted to be more protected actually, because I am really a person who always uses condoms; however, you know, this doesn't stop things from happening” (Isadora).

“They did say that it is a drug that prevents AIDS and I was interested, right? Now I sometimes slip up” (Sara). “Hm, ‘slip up’ is sex without a condom?” (interviewer). “Yes” (Sara).

The condom, historically propagated as a prevention norm, appears in these narratives with “new ethics”, more flexible, in which the notion of obligation before the norm is replaced with the logic of responsibility ²⁶ and self-improvement ²⁷. This enables thinking about its use in a lighter way: here the “lack” becomes a “slip up”. The diversity of performances reveals the young person whose head does not heal, in the different meanings: the one who anticipates the need of cure by adhering to the prevention logic, as well as one who does not become dry and hard when exposed to the weather.

Gender and medication performances

The medication reveals signs built by and in the gender performances. PrEP is associated by the young people with other drugs, such as “the day-after pill”, contraceptives, ecstasy, which are not related to the treatment of diseases, indicating the presence of medications in several domains of life ¹, related to the management of emotions, fertility and the improvement of life, for example.

In the girls’ narratives, the medication is associated with a grammar of people/institutions generally recognized as belonging to the female universe, “scientifically classified” by the hormonal and fertility control ²⁸. It is known that historically, the “scientific classification” produced categories, concepts, objects, which, when associated, build “types” that are institutionally recognizable ²⁹. The woman type, in a logic of “essentialization of the difference between genders” is reaffirmed by the presence of sexual hormones ²⁸ and fertility (to be controlled).

“Like the hormone, I would prefer if there were the Durex one, like this one [shows hormonal patch]. Which is easier, because I also used to take a drug, the tablet hormone, and sometimes I even forgot to take it. And with this one, which is just to stick, I know it’s stuck to my body, so I won’t forget it” (Maira).

“Ah, I think mom doesn't believe in it. She keeps thinking it's something I invented, momentarily [about being a trans woman]. (...) That’s what I say about the freedom I really want to have: to be able to leave my house, start my drug and hormone therapy, everything correctly. (...) It is, really, I am too young to think that way, but these are the dreams I talked about: to have my house, to be able to take my drugs correctly, to wear the clothes I want” (Isadora).

If in quick reading, PrEP, together with the hormones, seems to compose a lexicon that reinforces the scientific classification of the woman type, in deeper reading, it seems to offset the hormone. By not reinforcing the “essentialization of the difference between the genders”, hormone and PrEP together configure experiences related to the improvement of life and towards the freedom one really wants to have.

“This one you take after having the relation, but it is PrEP” (interviewer). “Like the day-after pill” (Luana).

“So, do you think you would be able to tell me now that you know a little bit about the best ways to distribute PrEP?” (interviewer). “Isn’t it a female thing that you take not to get pregnant, and then stay a month?” (Sara). “Do you think it’s good?” (interviewer). “I think it’s perfect, because there is no worries if you miss a drug, if you do not take the drug on time” (Sara).

The question to be asked is to what extent these young women feel impelled to perform “true transsexuality” towards recognition, historically built in the health area, of those who deserve medical and health care and intervention ³⁰, such as PrEP. With no intention to answer it, the question invites us to relearn how to see and listen, in order to walk alongside these young women in health care - which is constantly rethought - and which also enables “(un)learning about oneself” ³⁰.

In Lucas and Henrique’s narrative, the symbols indicate boundaries in the performance of masculinity. The drug is a “good object” ³ able to transform itself into a bad drug, able to make you drool over (and fight in the club) or die, as in the poisoning contexts.

“There was a problem that when I entered the club once; the PrEP tablet resembles ecstasy a lot, so the security guards thought it was ecstasy and I couldn't get in, I had to take it outside and it was useless, if I went back there, they would say: ‘Where's the ecstasy, where did you leave it? Did you take it all, you will drool in here’. So, what did I do and am I still doing? I take it beforehand, because there is no problem taking it an hour before, and I do it because people think that it is a drug. It is a drug, but it is not a bad drug. (...) It can be very confusing, I still put it in a small plastic bag, and it looks beautiful” (Lucas).

“When I started taking my medicine, my mom and my dad were talking to me, you know? (...) Saying to be careful, you can’t take the medicine - they had even sealed the medicine, but then (...) then I managed to open it and started taking the medicine. (...) It is because, when I attempted suicide, I took a blister of medicines. [And they] are afraid that I will go and something will happen and I’ll take everything and die” (Henrique).

Masculinity can also be communicated as a way of “disobeying” ³ the logic of the health care medicine ³¹, considering that the care has been historically associated with women and femininity. Although the boys are adhering to the medication, they perform “disobedience” when they signify and inform the potency of the medication to cause harm, able to act in two opposite poles and very much used by Western therapy ³²: the drug as sedative (self-extermination) or arousal (ecstasy, fight with the security guard). According to data from the Brazilian Health Informatics Department ³³ by sex comparison, the rate of hospitalization for injuries and poisoning is approximately two and a half times higher for males.

The secret and the socialization of the medication

The consumption of medicines, used to improve life, which have been previously perceived with certain inferiority - as products for aesthetic intervention - has been increasingly recognized in moral terms and is part of the narratives shared by people about self-improvement ²⁷. Drugs can be a message, a way to speak or respond to others and also a possibility to listen to yourself ³.

Among our interlocutors, the use of PrEP is a subject, and often, an experience common to that of friends. Unlike the secret logic, common in the daily lives of people with HIV, which makes individuals change their sociability networks to get closer to others they have affinity to or the same concerns ³⁴, PrEP reinforces the “us” present in the network of friends.

“Everyone is already used to talking about and speaking [about PrEP]. There is even a friend of mine who had an affair and was afraid of getting HIV, because he was feeling strange, he said: ‘I could have PrEP in my life’, I said: ‘what a pity, you’re heterosexual’” (Danilo).

“All my friends take it too” (Isadora). “Who have you told that you are taking PrEP?” (interviewer). “I never told it because it wasn’t something mysterious for me to come up and say: I have to tell you that I’m taking PrEP” (Isadora).

Among the groups of friends, the medication is seen positively, and it is possible to say that it can represent status ²⁷, as it cannot be purchased by any one in pharmacies - it is only available for this age range in the research field - and it also means access to the doctors, which, although covered by the Brazilian Unified National Health System (SUS), can be expensive for young people from the popular classes. In order to minimize this possible reinforcement of hierarchies, the project is able to serve everyone who looks for it, and provides funds for transport and food, in addition to having the fight for possible offer through SUS as a goal.

Another form of status that draws attention is the fact that the medication is available only to gay men and trans women. The construction of HIV-related actions aimed at this population is frequently criticized in literature, in the perspective of strengthening the sexual orientation - HIV relationship ²² and the control and homogenization of the bodies and the sexualities ^13,14. However, the young people in this research seem to place the PrEP offer in the positive discrimination logic and be proud of it: “you don’t have to worry, what a pity, you’re heterosexual”.

“Yes, they highlighted that it was for trans girls. This is what made me want to come more. (...) Because we are minority. I thought: aren’t they doing a project for us? I will do it” (Isadora).

“I actually found it very funny. (...) The LGBT community in general is not aware of what PrEP is. So I think this is something that we have to take into consideration a lot, you know? The information. (...) Because he didn’t know... A person older than me... A 30-year-old person did not know what is HIV pre-exposure prophylaxis, understand? (...) Does a person who is financially very well, with a very good career and excellent financial condition know what pre-exposure prophylaxis is?” (Igor).

Within the LGBTQIA+ community, PrEP may also mean cultural bases, and also place adolescents in a more horizontal place of knowledge compared to adults. In this context, the relationship with the drug seems to generate openings for other fundamental dimensions of culture and life modes, such as relationship with knowledge and authority ³⁵.

In general, our interlocutors affirm that there is no secret about PrEP among their peers, which does not mean that this sharing is free of questions and mainly free of the stigmas of the association with HIV.

“Once a guy said, we ended up arguing because he said that most trans women have AIDS, then I said that I don’t have it, that I know how to protect myself and that most cis men also have AIDS. Then he thought it was bad, I ended up blocking him because he is very annoying. (...) Because I talked about PrEP, that I take PrEP. Most people I talk to already understand” (Sara).

“Like, I only went to find out what PrEP was even after a friend indicated this thing to me, but a long time ago I heard from other trasvestis, I heard about debauchery, you know? ‘Ah, you’re going to take PrEP, you’re going to be stamped, I don’t know what, I don’t know what’. (...) I’m like this: ‘Guys, who is this?’ I think it’s there to help us and anyone” (Maira).

It is interesting to note that, except for Maira’s report, whenever there was this communication associated with stigmas, it was in the virtual environment; in Sara’s case, resulting in blocking the interlocutor.

Before a health policy that has minimized efforts to promote education and dialogue about sexuality and sexual practices ²². these adolescents were very alone and exposed to the stigmas to get information about the basics. The PrEP1519 study has made efforts in this direction, one of which is the creation of a trans robot called Amanda Selfie, whose profile on the social networks informs about PrEP, STIs, gender, sexual orientation and other topics in a language adequate for the peripheral LGBTQIA+ young people ^36,37.

Unlike the group of friends which the use of the medication seems to be shared without restrictions, the socialization of the medication in the family reveals new dynamics and new meanings. In general, the family with whom they share the use of the medication is the closest family, and in this case, closeness refers to the ties established with the people, the generation, as well as the physical closeness related to the one who sees them and can live with the drug.

“My mother and my sister, the first time when I got home with the drug, I already told them. I said: well... I told them, everything. Then my sister even asked whether it was only for trans girls or women too” (Maira). “And who else in your family have you commented that you’re using PrEP with?” (interviewer). “It’s just that my family is my mother and my sister. But I have (other brothers). But they don’t live with me, so there’s no reason for me to tell. If she asks me one day, she gets home and I’m taking it, I’ll tell” (Isadora).

“I told some members of my family, such as male cousins (...) Ah... And male cousins as well... And there were people from my family I didn’t tell to, you know, because they are a little older, they don’t comprehend and don’t understand how the project works (...) And how it works” (Lucas).

In general, the families welcome the news about the medication as something that helps them in the future not to be at risk, but some manifest doubts about the preventive character of the drugs based on the popular knowledge that drugs are used to treat or cure diseases and not to prevent them, as Isadora explained to her family. One of the reports draws attention due to the fact that mother and grandmother are surprised with the possibility the medication to improve health, offsetting from the common place to cure the disease and entering other spaces of life ^1,27.

“My mother resisted it; she did not believe that there is a method that prevents the transmission of HIV. She thinks that when you have flu, you go there and take a medicine, when you have HIV, you go there, have a cocktail. ‘It’s not like this. Medicine is only for later, only when you have the symptom’. Until I explained it to her, it was very complicated. She still tells me to stop taking it, that it is making me lose a lot of weight, that it is causing depression and a lot of things. My grandmother said the same thing” (Lucas).

No situations were reported in which the medication triggered common discussions between families and young people, such as those related to sexuality, or use of illicit drugs ³⁸. It is clear that these girls and boys communicate the place of autonomy granted by this prevention modality to each other. They are placed in contexts of vulnerability, such as adolescence, gender identity, sexual orientation, and socioeconomic situation; thus, having a medication at hand and using it is the autonomy that may minimize “future problems”, as Isadora said to her mother, and also improve her life in the present. In this direction, the logic of freedom is not individualistic, but rather collective; and it is based on the comprehension of “the right to health as a material condition for the expansion of the area of possibility to exercise the right to freedom” ¹² (p. 356).

Final considerations

The youngster’s narratives reveal plural meanings of the medication and its social use, composing their performances. Signs related to the medication and prevention, medication and gender, and the medication socialization stand out, which indicate that in addition to the maintenance of health, the medication is situated in the context of life improvement and sexual freedom. We consider that the results correspond to the current literature, problematizing some aspects, such as “high medicalization” related to PrEP, and also collaborating with it regarding health rights, autonomy, and perspectives of young people on HIV prevention, which contributes to improving and stimulating the debate in the area. PrEP is a message, in which young people communicate the desire and the knowledge about care for their own lives to each other. A possible limitation of this article is the impossibility of comparative analysis among the three centers, which indicates possibilities for further reflections and studies. It is expected that this study can contribute to evidence the importance to comprehend the social use of the medication, in order to improve the health care of the diversified young population.

Acknowledgments

PrEP1519 Research Group and Unitaid.

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Publication Dates

• Publication in this collection
  27 Mar 2023
• Date of issue
  2023

History

• Received
  15 Apr 2021
• Reviewed
  23 June 2021
• Accepted
  09 July 2021